Kate Swaffer: Creating life with words: Inspiration, love and truth

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Respite vs Bed & Breakfast?

Many of us with dementia really dislike the term respite; we also dislike the terms Day Centre or Day Care as that’s the place we took our three-year olds. Anyway, a friend Sarah Yeates and volunteer of DAI who is also the manager of the Caledonia Dementia Care recently asked me what I thought would be a more acceptable alternative name to respite, for a new overnight centre they are setting up for people with dementia (rather than the Trish Maggs Respite Centre).

The other day, I had a light bulb moment, and suggested they call it the Trish Maggs Bed and Breakfast…

Spending a few days and nights in a B&B seems far more appealing than going to respite.

What do you think? Feel free to add your thoughts.

I met Sarah a few years ago when I was invited to speak at their AGM, and we have remained in contact and become friends since then. She has also been a wonderful volunteer for DAI. and many other organisations. Thanks Sarah and Maggs, for your passion, your willingness to learn from people with dementia, and also your hard work for DAI.

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57 thoughts on “Respite vs Bed & Breakfast?”

Perhaps, we need to mind our language not only about respite… but also calling our care profession an industry! We don’t refer to medicine, nursing, physiotherapy, psychology, podiatry, audiology, social work or occupational therapy as ‘industries’. Also, ‘sojourn’ aptly describes the sort time away without negative connotations. A sojourn weekend at a B & B? What’s not to like?

I’d not thought about calling the care profession an idustry, great point! It might be why it is so ard to attract more people into aged and dementia care. It would help if we paid them as well as others too… thanks for connecting here. Re calling it a sojourn weekend, I’m not sure what I think of that. In Oz, it is hard ot have a weekend of ‘respite’, it is usually 2 weeks or so many days a year, but most providers that I know of restrict it to two weeks at a time. That may have changed though. I still personally prefer the term B & B – for 1 day, or 2 weeks.

I think “industry” is part of the VET sector’s language. The professions you mention require university training, whence “professionals”.
There’s still no career path for careworkers…and there should be!

That’s part of what I want to keep working on Kate. The battle for better pay has been going on for as long as I’ve worked alongside the sector, i.e.25 years or more. Now the ANMF has lost the battle for RNs 24/7 in all RACFs, the next fight will be staffing ratios I reckon, as we move to a common standards framework across community and residential.
I’m interested in how CDC packages translate to hours of daily 1:1 support in both settings. I can tell you that level 4+dementia supplement equates to no more than 15 hpw where providers are taking a third of the funds in costs, so let’s say an average of 2.2 hrs per day. That’s about the same for most RACFs.
BTW these residential hours are just about half the minimum level considered “safe” in US regulations! So we can do some work as the standards get closer to requiring legislative change in terms of “safety” perhaps…but I doubt there will ever be an agreed staffing ratio between employers and staff of private facilities.
We boomers, whether funded by Aged Care or the NDIS, will need to speak out loudly, along with COTA, Alz Aus, the relevant unions and the disabilities movement (along with all our crossover groups like ACON, indigenous , multicultural associations etc) by doing the math & comparing Australia to other developed nations in terms of social & health care. We live in a highly regulated space, but it’s not necessarily a guarantor of quality, as we all know. I think we have to argue in terms of “value for money” or, from another perspective, “best bang for your buck!”

Kate, I think “industry” is part of the VET sector’s language. The professions you mention require university training, whence “professionals”.
There’s still no career path for careworkers…and there should be!

Apolgies Merle, Lynda and Kate for referring to “industry” in my sentence :

“1) in the dementia / aged care industry “respite” is always stated as the 63 free days in a Nuring Home each year.

The reason I used the word “industry” is because I was referring not to the ‘profession of caring, supporting and enabling’, but rather referring to all the different organisations in the field of aged care, viewed collectively, such as all the Government Departments, Not for Profits, For Profits, Nursing Homes, In Home Community Care, Advocates, even financial planners, accountants and lawyers specialiing in advice in relation to aged care.

Industry is probably a hang over from my 30 year old Economics Degree.

The point I was trying to make is that the sector constantly refers to “respite” as only being the 63 free days in a Nursing Home whereas the Government themselves fund differernt respite options, such as 24 hour in home community care funded in whole or part by the Commonwealth Carer Respite Centres. This type of ‘respite’ is much better suited to people living with a dementia as it leaves them in the place they feel most familiar with, comfortable in and where they have the best quality of life, as it involves the least changes for them. And it frustrates me that respite is only taken to mean 63 free days a year in a Nuring Home.

A lady I know whose husband has a dementia was asked by an Approved Provider what her goals were for the CDC Home Care Package for her husband and she said to have some respite – and the Approved Provider said “oh no that’s not what Home Care Packages are for and left without giving her hsband a Home Care Package. This was pre-27/2/2017. What the wife really meant was “I need someone to assist my husband go to the toilet, shower, dress, eat breakfast, take his meds and take him for a walk each morning and in that time I will be going for a walk or meeting up with friends to maintian my health and social connection”.

I’ll use sector when talking about the collective players going forward.

I go back to R & R as a general term. We have spent the last 6 months (more) battling for me to get some R & R. It’s meant a battle of wills between V & me, a tortured conscience for me ( as I know how few options there are), resisting a continual series of pressured lectures from professionals, and a massive letdown from V’s service provider (they’re trying all they can to rake in the market for permanent residential care and don’t flinch at bending reality).

No-one asked us 4 years ago, soon after V’s Dx, how we planned to handle this dementia experience. I was told that part of my new responsibilities as a “carer”was to start planning to use the 63 days per year that V is entitled to in short-term residential care…that I would need regular breaks, that all PLWD lacked the insight to understand the whole picture, and that it would “start the process” as long-term residential care was inevitable.

From that day V equated the word “respite” with being hoodwinked into residential aged care….and she was right. From that day the hackles stood up on my neck!

I AM depleted and have been for about a year now. There have been long periods of ongoing trauma for me, as V’s symptoms “took off” before she received the services to which she was entitled. We are still battling to do what WE had planned, i.e. to build a sustainable team of support workers around V, who would also support me in the caring role. Obstacle after obstacle to our wanting to maintain our existing network of friends with cleaning, gardening, “handyperson” businesses. V’s in-home care package is being depleted by a third for the “services” provided via her service provider, at double the usual rate for what we would pay privately. It’s a massive con.

So much wastage of resources (and our time). ..I might total that up one day soon. Meanwhile those funds could’ve been going into extra support hours, so that I could continue to take short breaks away, while V could do as she wants, i.e. stay at home in her familiar environment, with company.

Grrrr….

We have enforced the banishment of “the R word” in our house, and in all our dealings with professionals. No more whispering in front of V, no more sly winks to me. I refuse to use the word even in emails. It’s a lie about whose rights it supports & it needs to be countered.

We too have banished the R word in our house, along with the S word, the V word, the C word (carer/caregiver – which implies I am always taking, and Pete is always giving!!!), and many others too!

As you well know. It seems the system sets us all up to fail, and tmakes it worse than it already is for those if us diagnosed, and those of you supporting us. God forbid, I was only talking to a woman in her 40’t this week, diagnosed less than 6 months ago, who has been told to ‘prepare to be living in residential care within two years’, and to hurry up and get her end of life affairs in order. Yes, it is still happening. Prescribed Disengagement® is no longer a case or two of anecdotal evidence, there are literally thousands of people telling us it is still happening, right now, in Australia and around the world, today.

Love you my sisters, and see you soon. I’ve got my camera packed for the “Two women with dementia having a Big Day Out together in Sydney” !!! xxxx

1) in the dementia / aged care industry “respite” is always stated as the 63 free days in a Nuring Home each year. That is not the only respite option. Frankly, that might be respite for the care partner, but it is the worst thing you can do to someone with a dementia. It takes the person out of their familiar, comfortable environment which deeply unsettles them. More often than not the person returns home far worse off on many levels (reduced physical ability, reduced control of their bladder and bowels and increased fear based reactions). Many a client has said to us over 19 years “its not worth it, dealing with the consequences”. Every service we provide to our clients is also a care-break their care partner. The Government also funds live in home care so the care partner can have a real break ie go on a holiday and re-charge their body and mind.

2) Home Care Packages where the Approved Provider is taking 46%pa of the Government Funding in administration, core advisory and case management fees before a dollar of care is bought/provided. I’ve audited hundreds of Home Care Statements and last week I found the June 2017 statement for a large charity was taking 46%pa of the Government Funding when 20%pa is a fairer rate. Many times there is no case management – there is just order taking. Too many care partners are burnt out because help comes too llittle, too late with no real discussion of what will make life joyful for all – the person with a dementia and their care partner.

Of course you can Kate… these things frustrate the hell out of me too! In the remote parts of Australia, e.g. the Kimberleys, it not only take up to 12 onths to get a service, the providers take more than 70% of the money! That truly is as bad as a crime. How we change this across the sector is what I’d love you to write a guest blog about, if you have time, and any clues!? xx

Thank you Kate. Veda and I had the pleasure of seeing our dear old neighbour Ed cared for at the end by your organization. I totally agree with you. We are likely to change providers to swap 34% for 18% total costs.

My ideal “time out” continues to be regular trips to Sydney, as has been the case in the 20+ years I’ve lived here in the Illawarra.

There are times when I’d like (and need) some time alone at home, but I think we can resolve this , at least for now, by V taking genuine holidays to visit family and friends. I must say that it was she who refused many invitations a few years ago, so it has been an issue of competing rights for us lately and I have had to step up to assert mine.

The “carrot” held out by professionals to those still in shock after a Dx is that, while it will be a horrible & inevitable experience, we “carers” will survive it IF we organize “respite” from the outset. If I had been a “good girl” I should’ve been dragging V to visit facility after facility to “choose” her future!!! (“while she still can participate in decisions”). Bloody hell! I had visited 10 facilities in the region before, for my late partner and my late mother, and told them that.

Noneplussed, they suggested I visit several “cottages” that are used for support groups and for long weekend respite. V and I did just that, as we occasionally attend YOD support groups in rhe region to encourage others to join our social group. They were horrible, even to attend a 2 hour meeting…freezing cold, old furniture, bare single rooms with lino. I asked V one day if she’d like to spend a weekend there…I can’t report her reply in public!😉 We both just laughed.

I finally demanded a coffee chat with the 2 “dementia advisors” concerned, to tell them that we have zero intention of “getting V used to residential aged care”, and to tell them how personally confronting the “dominant narrative” has been for us. To give them credit they got it, though one still shook his head at the thought of EOL at home (he’s an RN with 40 years experience in palliative care, emergency care and dementia care, and his father had YOD).

We ARE needing new models for a “new narrative” and to think outside the square. Many of our #KiamaDAGs intend to continue to ignore the residential aged care respite advice: we hope to support one another within our community. We could better use our support hours this way, e.g. one support worker in our large kitchen, (shared by 3 PLWD) cooking up a storm…. and a party after, for all of us!

It gets much more difficult when people need support, in their own home and bed, overnight. V is just about at that point now after 5 years, needs the security of knowing there’s someone in the house-though she sleeps like a log usually. This is where her CDC budget surplus will be eaten up fast.

As you know, I am right by your side L & V… what ‘we’ could all do, if we were simply given the money in the package to manage ourselves, would be incredible. In fact, when the current President of Alz Australia attended his first Ministers Dementia Advisory Group meeting in Melbourne (ex ACCC boss), he asked that question, When the ‘sector’ said no, of course not, he then said, ‘then it is not consumer directed care’!

I know that people can’t simply receive government funding (whether aged care packages or NDIS) directly into their personal accounts, and I know that there would be huge implications for elder abuse if that occurred. The feds need accountability and reporting, always.

But if someone like me were prepared to meet those requirements , which all registered service providers must, why couldn’t V’s funds go into a specially designated account?

Which brings us to the question of regulation of providers, and whether individual support workers would want to work outside of a framewoek that protects them for Workcover, super, etc.

I think the best we can do is a mix of small service providers who personally care (like Daughterly Care)and take only what they need to cover their own real costs, and platforms like Better Caring where clients and workers can meet and decide on agreed services, with security on both sides.

That is, unless we #KiamaDAGs form an entity, chip in at least some of our individual budgets, and work out creative ways to get the maximum “bang for our buck” 😊

Why can’t people receive the money into their accounts? I was involved in the Incontinence scheme, when the funds used to be allocated to a product provider, chosen by the government, and who held a range of brands. That system was abused all the time, by older parents who did not want to admit they were incontinent, and took the products away from their disabled adult kids. I saw this first hand. A separete legal guardian or designated account to care for that system would have been better. Now the supplement for anyone who is incontinent goes directly to the person (or their legal guardian), and is spent, without the middle man taking a huge chunk of the fee.

So, personally, I do think it could and should happen for aged and dementia care, as the number of guardians who will abuse it are probably far less than the number of providers who currently rip us off. Just a thought… xx

Lynda, I have been thinking about the fact that “V sleeps like a log” but likes to know someone is there and cost effective support.

We had a lovely client who couldn’t go to sleep unless she knew someone was there with her The cost of sleepovers was prohibitive on an ongoing basis. We suggested to the daughter that we do an evening visit, prepare dinner, ensure it was eaten, medications taken, assisted client to change and then we lovingly assisted the client into bed. We often sang a song that soothed the client to sleep. Once the client was asleep our Caregiver left The client slept like a log, to use your words describing V, and awoke well and happy the next day.

Its about knowing what the client actually needs. If we didn’t stay until she was asleep she called her daughter worried all night. This support was cost effective and gave support when the client needed it – which wasn’t all night.

It’s a great examaple of thinking outside the box. For me, it wouldn’t work, as if I needed someone overnight when I sleep, I don’t ‘sleep like a log’, but rather wake up a lot, so as alwauys, every service provider has to individualise services to each client. x

I too have been trying to think of other names for respite, so that it sounds more welcoming and inviting and I thought of R & R, rest & relaxation, respite and rebuild, it could cover quite a few meanings and everyone loves the thought of a bit of R & R

As I have been responding to everyone’s comments, my one reservation with retreat, is it would only for, if it truly treated people there as if it was a retreat, not just a fancy name, for the same old ‘care’ currently most provide. x

Absolutely spot on. Why shouldn’t it be called a B&B? In fact, why just call it a B&B? Could it not be akin to a B&B in other respects, such as atmosphere, located with a beautiful view, chocolate croissants? Would such things substantially interfere with the provision of support? Would it not enhance the experience all round?

Yes, the word “respite” is used by the business world to target care partners (i.e, giving them a break) but does not speak to the end user, the person with dementia. Once again, you’ve hit the nail on the head about how words completely ignore the people we are trying to help! B&B is a great idea, and if it’s promoted as such, maybe it won’t sound so dreadful to our loved ones. Another great word is “haven”, something that conjures safety, impermanence and is more positive than not….